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A small plastic pipe (like one you would smoke with) that has a ball bearing about the size of a marble (about 1 1/4" to 1 «" in diameter) in it. When you blow into the pipe, this causes the ball bearing to move up and down, creating a vibration that pulses down into your airways thereby loosening up the mucus. Said to work pretty well by some on CYSTIC-L. May be purchased through the CF pharmacy on prescription for about $110.00. Scandipharm in Atlanta Georgia also carries the Flutter, and has national delivery. Some people have reported that the Flutter may come apart; reportedly, for a $25 money order, one can ship the flutter back to Scandipharm and they will replace the whole piece and ship it second-day air.
The Vest™ Airway Clearance System The Vest™ system is a medical device designed for clearing excess mucus from the lungs. Used widely in homes and hospitals, it consists of an inflatable vest connected by flexible tubes to an air-pulse generator. The generator rapidly inflates and deflates the vest, gently compressing and releasing the chest wall. This technology - called high-frequency chest wall oscillation (HFCWO) - loosens, thins and moves secretions toward central airways so they may be more easily cleared. The Vest system simplifies respiratory therapy routines, allows user independence, and is associated with better treatment adherence. Studies show that The Vest system therapy significantly improves secretion clearance and helps sustain pulmonary functions. It is used by more than 12,000 cystic fibrosis patients in their homes and in over 95 percent of Cystic Fibrosis Centers of Excellence. Cleared to market by the Food and Drug Administration in 1988, The Vest system is a product of Advanced Respiratory, Inc., located in St. Paul, Minnesota. For more information about The Vest system, call: 1-866-411-8378 or visit on the Web at: www.thevest.com .
There are several types of different access lines for intravenous infusion. The length of time the delivery line needs to be in place, and the type of drugs infused, usually determine the type of line used (along with hospital protocol and familiarity). Selastic and other non-irritable materials are preferred to protect the accessed vein and preserve it for future use. There is also a cream (EMLA) that can be rubbed on the site prior to sticks which numbs the area. Peripheral Lines The Butterfly is a small needle typically used with children for many things including getting blood samples and inserting a peripheral, short-term, IV line (usually in the hand or lower arm area). It is wholly above skin except for the needle entry. The peripheral Butterfly usually only lasts a few days and must be changed which is why they are seldom used for IV antibiotic courses (which may last for 10-14 days or longer). Mid Lines Landmark and Menlo are both trade names for lines about 8-12 inches long which are typically located in the forearm and can last for 2-4 weeks (with care). A Landmark Catheter typically goes in the inside of your elbow (where blood is usually drawn) because these are not small peripheral veins like the ones found on your forearm. All that's left outside your arm is a butterfly with the tubing and valve attached for infusion. They last so long because they're in bigger veins. Bigger veins are less easily irritated by repeated infusions, especially with strong, irritating antibiotics (e.g., Tobra). Recently questions of safety have been raised about the Landmark, and they are no longer manufactured (see newspaper articles in Appendix L, Longer Articles, item 2). Central Lines The PICC line is about 18 inches long (and can be cut to size) and is generally inserted in veins in the arm, looped through the shoulder area, and rests in the upper chest area (under the skin). The PICC is generally inserted in either a vein located in the arms, neck or upper leg area. It can function in the body for months at a time, although in the USA it isn't generally left in beyond six weeks (though in England PICC lines are left in for up to a year). It has a small port which is stitched down outside of the venous entry site. Because a PICC line enters into a major vessel lying near the heart careful hygiene methods (sterile protocols) are recommended to avoid bloodstream infections which can be extremely serious.
One clue for women getting a port. My surgeon had me wear a Victoria Secret Bra (Second skin satin) and outline it with a black marker the night before surgery. Then during surgery she was able to place it in the best possible place. Most women I have met that didn't due this can't wear a bra while they are accessed due to he strap rubbing the port. The Victoria Bras are better too because they are satin and are cut much wider than usual. Ports and TPN QUESTION: Has anyone had any experience with TPN with their ports?? My doctor and I are talking about doing it to help me put on the last eight pounds I need, but I'm concerned about possible side effects and complications. He said he's only had one of his patients ever get her line contaminated and it was from yeast. I would appreciate anyone's input. I'm calling the tx coordinator as well to ask her if it's okay to do TPN. AN ANSWER: We had poor success with (our child's) port and TPN and I believe that it was yeast infection. The port had some low grade infection, but when it was supplied with the TPN solution, the infection "bloomed" and we had several days of absolutely horrible fevers and several more days of recovery from that. This was all during the stay of his pneumothorax. It was not pleasant. There may be positive case history for using ports, but it did not work well for (our child). ANOTHER ANSWER: When I had my port TPN had made my "low-grade" infection get worse. I was on some hidious combination of TPN mixed with lipids!! The combo made me feel very sick at times. I still can't figure out why I would agree to such a mix of medications. I think I was sold a big time line!! The Dr. who was trying this was a real good salesman, I think he also sold used cars on the side!!! But, It was my choice and I went for it!! These were the same folks who said you "could hardly see my port" when in fact the damn thing was an inch above the rest of my chest!! I noticed this when they took the bandages off after surgery.. Ahhh have I learned!!!!
Hickman catheters, PICCs & Ports: An Overview (5/97) of Intravenous Access Devices By Kathleen O'Connor, C.R.N.I., B.S.N. Reprinted from "Network", July 1996 (see Appendix for subscrption information) Intravenous (or IV) antibiotics are important for fighting infection in individuals with cystic fibrosis (CF). Fortunately, there are many ways in which venous access may be obtained. Peripheral catheters are placed by an R.N. or L.P.N. in the forearm or hand and require site changes every two to three days. Midline catheters are greater than six inches in length, but do not pass the shoulder. They are placed by an R.N. in the bend of the arm and may be left in place for up to six weeks with sterile dressing changes once or twice a week. For longer therapies, a peripherally inserted central catheter (or PICC) line is used. This is placed by an R.N. into the vessel in the bend of the arm and threaded so that the tip is in the larger vessel in the chest. Another catheter occasionally used for home care, but more often. used in the hospital for therapy up to one month, is the central venous catheter (or CVC). These are inserted using local anesthetic by a physician and usually placed in the chest near the clavicle. The catheter goes into the subclavian vein and towards the heart. It is always sutured in place and requires sterile dressing changes two to three times per week. For therapies requiring access for an indefinite period of time, a true central line placed in the chest by a physician is the first choice. These catheters are very similar in composition, placement location and care and use. They are divided into two types: tunneled and implanted. The tunneled catheter itself is inserted under the skin and then tunneled from the skin entry site to the vein entry site near the clavicle. This provides more security, protec- tion against infection and makes it easier to conceal under clothing. Broviac and Hickman catheters are open ended, require flushing with heparin daily or after each use and have a portion of the catheter, up to approximately 6 inches, dangling from the chest exit site. Groshong catheters are closed ended with a slit in the side of the tip of the catheter. They require flushing with normal saline after each use or weekly. These also have a portion dangling from the chest similar to Broviacs and Hickman catheters. There is usually a little more difficulty drawing blood from this type of catheter than the open ended. An implanted port is a catheter that does not have any portion visible outside the chest. The catheter is the same under the skin and in the vessel, but this catheter is attached to a small metal chamber (or port) that is placed under the skin and some fatty tissue. Most ports, Mediports, Infusaports and Port-A-Caths are placed at particular locations on the chest, while the port of a PAS-port is placed in the arm, usually below the elbow. To access this type of catheter, a special needle must be used. The needle is- left in place and covered with a sterile dressing when accessed. If access is needed once a week, once a month or occasionally, the needle is removed after each use. Individuals are often instructed on the technique to access their own port or that of a family member. With this type of catheter there is no catheter dangling from the chest. Swimming is not a problem with a port, but is not recommended with other types of central line catheters. Tunneled and implanted catheters are more expensive and involved with placement and removal, but offer many advantages and little maintenance over the life of the catheter. Many are kept for years. Kathleen O'Connor, C.R.N.I., B.S.N., who does not have CF, is employed by Quantum Health Resources in Englewood, Colorado.
The 'Sidekick 100' is a home IV pump. It's 10 cm (4") in diameter and weighs 320 grams (1 lb.?). Cost is $25. The medication is supplied in small cartridges that you just switch out. The main hindrance is that you can not use the pump if you are using two medications that are not compatible with one another. For example, one PWCF reports: "Two incompatible medicines were Tobra and Piperacillin. Even with the unit dose meds (the PWCF) had to wait 30 minutes in between the two due to incompatibility" However another PWCF notes: "I have been on Tobra and Piperacillin (I think that's how it's spelled) many a time, and have run them back to back, with only a saline flush in between". Other pumps include the "Harvard Pump" which injects the meds via cartridge and is small enough (slightly larger than a full billfold!) to put into a pocket while infusing. There are also non-mechanical means of drug delivery such as the Baxter Intermate system in which the med is injected via pressure. A small elastic-type "balloon" holds the med in a small bottle (which resembles a baby bottle). One PWCF reports: "Either system is extremely convenient, especially if like me you often IV-on-the-go". Another option: CaddPlus 5400. "Two years ago I got two small home IV pumps, called CaddPlus 5400. Once every 24 hours you change the medication cartridge and hit reset. For the next 24 hours the pump delivers your med at the frequency and dosage required, then automatically flushes and puts you on KVO until the next dosage. No hooking, unhooking, flushing etc... Both pumps with cartridges fit in a butt pack, that I wear while on home IVs (often more than not!). This pump is an amazing Godsend, which allows us to sleep fully through the night, and have hassle free days while on IV. I purchased my pumps though Caremark, which is now Coram, and despite some serious time on the pot reading the manual over and over, I finally got everything figured out, and I must say, my life is soooooo much easier than with all those "baby bottle" devices, gravity, syringes etc.." Another CADD user says: "If you can arrange for a CADD Plus pump, they are the greatest! They are of the fanny pack type, very lightweight and portable. Depends on what drug you're getting as to whether or not you can use it. The reason being it only goes up to something like 100 mls an hour or so. Wouldn't work for once a day Tobra, but works well for some of the every 6-8 hour meds. And now I've gone and gotten this humongous Baxter pump. <sigh Oh well, what's a girl to do? " A first person report: "There are lots of ways (and prices) to administer IV drugs; the Intermate (or "baby bottle") pumps are really convenient for meds which have to be in 100 - 150 ml, as they infuse at a constant pressure, and also keep pressure on the line after infusing, so you don't have to catch the exact end of the infusion to avoid blood flashback. The pumps which require tubing and cassettes also work. We pay $10/day to rent them in WI. The Sidekick really does cost $25 around here--but of course the drugs mixed up in the little packets are a little more than the normal price. The thing with the Sidekick is that a patient owns the little "pump" (it's really two pieces of plastic with a spring on one side; the plastic bag of drug goes in between; don't you wish you'd invented it?), so the amount of medical waste (as with the Intermates) is way down. "The way we like to do home IV is IV push; much faster, easier, cheaper, but only certain drugs can be used, because of the volume they need to be mixed into. Re the Tobra/Pip debate: we give our Tobra twice a day only and are moving towards once a day, like most of the Europeans do and have done for years. There are some interesting pharmacokinetic reasons for this. With IV push, the meds are mixed in syringes. A typical schedule would be Tobra Q12 hours, push in over 5 - 10 minutes, and Pip Q6 hours, push in over 20 minutes. People usually do both Tobra and Pip at two of the sessions, and we just use a saline flush in between. We can send people home after a few days in the hospital with a cooler full of syringes, and they usually do quite well. We still don't like the Q6 stuff--if you live alone, you don't get much sleep--so we're trying to use some programmable pumps which are commonly used for chemotherapy. They're about beeper size, and are programmed to infuse every whatever. THE MAIN PROBLEM with all of these techniques is that the drugs are quite concentrated, and need to go into a big vein--like the subclavian. So a port or a long-line catheter or, in adults, a mid-line catheter are absolutely necessary. Otherwise veins blow and hurt like mad--and that happens enough without knowingly doing something to bring it about"
DeVilbliss Ultrasonic Model 5000 nebulizer. I have used mine for almost a year now and find the "no noise" policy great for places where you have to be quiet, like on airplanes! I put 6-8 ccs in the neb per treatment and this takes about 15 minutes to finish. The model 5000 is a demand neb so that when you stop inhaling in, the one way valve closes so that the medication is not wasted. Works for me. For comparative facts, here in Canada, last May it cost $535. It weighs about 4 lbs and runs on battery/cigarette lighter/household current.
Compressors (for use with nebulizers) Also known as "Pumps" Some people have found that compressors not designed for medical use are cheaper than those designed for medical use. CFers ARE CAUTIONED AGAINST USE OF NON-MEDICAL COMPRESSORS! They may have components that are unfriendly to the lungs -- materials (e.g., seals) that give off fumes, flake off metal shards, etc. They may also be unfiltered thus blowing dirt, dust, etc. One person notes: "About using non medical pumps to drive nebulizers (nebs): pump performance is a critical factor. Your pump must be powerful to drive air through your neb fast enough to make it work, i.e., nebulize the drugs you are using. Typically this means a load-free pump should produce roughly 25 liters of air per minute. A pump with a neb attached should move 6 liters of air per minute through the neb and maintain air pressure in the line between pump and neb at least 10 pounds per square inch. This is a minimum requirement. In Australia local pharmacists can usually check pump performance as part of their asthma services; as for more primitive nations/health systems, I can't say. In addition, I maintain my concern about the quality of air produced by non medical pumps, and draw your attention to the special pumps used to fill SCUBA tanks with clean sweet air, not dirty oily compressed smog" Compressors are made in a variety of styles -- some are more portable than others, and some plug into automobile cigarette lighters. A manufacturer of compressors for medical use is:
Supplemental Feeding - "The Button" The button (typically understood to refer to a G-button) or "peg" as it is sometimes called, will help you to gain and maintain weight, and it will help you to maintain a better level of nutrition. This higher level of nutrition can help you to fight infection better, and to have a stronger, healthier body. Another option one may have before using TPN (Total Parential Nutrition) is a J-button. Often PWCF have a G-button ("Gastronomy", in the stomach), as opposed to a J-button ("Jejunostomy", in the small intestine). A J-button can be an intermediate step, often more effective than G-tubes, but without the liver complications associated with TPN. A First-Person Account: I have had a button for almost 2 years now. It has been the best thing for me, and has really saved my life... I am 22 years old, and I weigh 125 lbs now. Two years ago, I weighed 105 lbs, and was continually struggling to even maintain that weight. With such poor nutrition, I was getting sick very often. I had my button placed under general anesthesia, so I didn't feel anything when they put it in. It was a little painful for a couple of weeks afterward, because the site had to heal. But it was not excruciating pain, and it only hurt when I coughed real hard. I get my button changed about once every six months. My button is a MIC button (pronounced "mick"). It uses an inflatable "balloon" to secure the button inside the stomach. The part that they put in is about the diameter of a pencil, and it slides right in the hole. But after it is in, a balloon is inflated inside from the outside to secure it in place. To remove it, the balloon is deflated from the outside, and it simply slides out. No pain at all. Bard buttons are done differently, but I have never had one of these. I would recommend the MIC button, as it is comfortable and it does not hurt going in or coming out. Another First Person Account: "I've had a button for about 5 years, and it has worked *superbly* for me. My height is now in normal (I think tall) range and weight is just barely below. I eat about 3500 calories/day and tube feed 950cal/night = about 4,500cal/day. I sometimes bolus a can or two of peptamen during the day, but am careful to not rely too heavily on tube feeds during the day".
Aids to Positioning During Postural Drainage Infants are often held on laps and legs of the therapist to achieve the proper position and angle to drain various lobes of the lungs. Larger children and adults may use a variety of aids to achieve the same purpose. Members of CYSTIC-L report using a situp board purchased at a sporting good store or Sears, an old bench propped on an egg crate, an ironing board propped up on the couch, and a "wedge" made from a large piece of very stiff foam covered with vinyl (a triangular wedge which is 25" wide, 18" high, 36" long (the side which rests on the floor), and the "working side" or hypotenuse side is 40" long) made at cost ($100) by someone who covers boat cushions. Physiotherapy Ball First person accounts: Recently our physiotherapist recommended the use of a physiotherapy ball for our three years old son who is PWCF and of course we bought it. It is a rubber (or plastic?) ball 95cm (three feet, 1.4 inches) diameter (air inside). During physiotherapy my son is lying down on the top of the ball and the vibrations we produce (e.g. on his chest) are coming back at the other side of his body (e.g. at his back) by reflections from ball. Other benefits (for my opinion) are 1) easily rolling the ball sideways, back, forward ... we help mucus find the way out and 2) physiotherapy is now a playing time for my child as I always trying to be (I don't know how long it will last :-) ). We also have a lot of fun (and vibrations too) playing some other times with the ball. I've used one of the physio-balls recently on the suggestion of my physical therapist, but not for chest percussion... I've been coughing so much recently that my chest wall, really my whole torso, has gotten pretty tight. The pt suggested lying on my back, arms over my head, and using my feet (on the floor) to slowly move the ball. This is a really good stretch for me. It seems to reach chest, shoulders and upper abdominals effectively. I don't own one now, but am looking into it. The pt dept. at the hospital had several--they come in all sizes. I'm sure that something from Toys-R-Us would suffice, but probably would not be as effective. The ones that I used were made of a very thick, durable, plastic-rubbery stuff which allowed them to be pumped up really tightly. That gave my back really good support. I think the heavy-duty nature of the thing also made it much less likely to slip out from under me. The ones I tried ranged from (estimated) 1 to 2.5 feet in diameter.... I used the term "Physioball." I think that's actually a brand name (?). For Christmas a friend of ours gave my 7 yr old son (with CF) a 40" red rubber ball from Toys-R-Us. At first I about came unglued--- a 40" ball now living with us. However, after about 5 minutes seeing my son on this thing I said "this is great", "a new way to do CPT". It works great, he :
If you don't mind a 40" ball becoming part of you decor this is a great for CPT. (Be aware that they will play with this thing and will soon attempt to stand on it and try to balance.) Regarding the physical therapy balls. These are available from a company called Flaghouse Rehab. The balls are listed as Theragym balls and come in seven sizes from 18" ($19.95) to 52" ($109.). Flaghouse also sells body balls in five sizes from 22" ($18.95) to 38" ($47.75). You can get a catalog by calling 800 793-7900. They're located in Mt. Vernon, New York.
Flimm Fighter. An electrically powered percussor called the Flimm Fighter allows one to administer CPT to oneself. First-person account: It came with three "heads": one was cupped, to mimic the action of hand percussion, but I actually prefer the one that is somewhat rounded. This one works better for me (at a height of 6'1"), but I think that it could potentially be more effective on little folks, because the percussive head might be a bit too big. I can tell you that I love the machine, and that it is at least as effective as regular hand percussion. It is (or was) made by: General Physiotherapy, Inc. IPVD, Intrapulmonary Percussive Ventilation Device. First-person account: Percussionaire Corporation Bird Airlodge
I picked up this brochure in our CF doctor's office last week about a stuffed bear that holds the neb cup. It is soooo cute! It was designed by a respiratory therapist. This soft, huggable, plush dark brown bear looks to be about 14-15" high. He has light colored paws and a little red heart that says "Nebby Bear" on his chest. He has a such a sweet and friendly face! He is made from hypo-allergenic materials, machine washable and dryable and comes with a storage bag to keep him dust free. Anyway, you thread the nebulizer tube up through the bottom of the bear and out a concealed opening in the top of his head - where you then attach the nebulizer cup. Nebby Bear is $35.00 (maybe a medical write-off, ya think?) For more information or a copy of the color brochure contact: American Respiratory and Rehabilitation
Vaporizers (Hot Water) vs Humidifiers (Cold Water) There are basically two types of room humidifiers. One kind puts out particulate water - mist that evaporates into the air as it leaves the device. This device, if not clean, will also dispense anything else into the air that is in the water, i.e., spores, mold, fungus, bacteria, allergens. There are several ways to put particles in the air: some spin, some are ultrasonic, and some work other ways still. The second kind actually heats up and puts molecular water into the air in the form of steam - sometimes called vaporizers, but don't let this term affirm that heat is being used. This should stop bugs from being sprayed into the room, but thorough cleaning is still recommended. I believe that most bugs are killed in the process. The other important factor to keep in mind is that bacteria grow better in humid environments, so keeping the carpets and other parts of the house very clean and sanitary is important. Letting the room dry out frequently, if not daily, would probably be a great idea. Something like 70% of the asthma in the Willamette valley in Oregon is caused by spores and fungus.- That's a lot! If having a room humidifier works for you, use it well and feel better. A good humidity range for CFers is reported to be 45 TO 60%. First Person Reports: I too have a lot of trouble with dryness especially with my oxygen. Before we got our two humidifiers, I did research by using Consumer Reports. After investigating cost, quality, convenience, and the difference between warm or cool, we went for the Duracraft 2.5 gallon output per day, warm moisture humidifier, model DH-904. It has some good features. It turns off if tipped over, it puts out an invisible mist due to its "advanced moisture purification technology", this partially eliminates white dust and some bacteria. Also has a humidistat or hygrometer that shuts it off when desired humidity level is reached and a medicine cup if needed. It's a good humidifier. Cost about $60.00. I've found a great warm "humidifier": It has a built in hydrometer which you can set to any percent humidity you want in the air, and it switched to just a fan when you hit this level of humidity, then switched back if you fall below. It's made by Bonaire and is called "Clear Mist." I got it at the price club. One type of "heat or warm" humidifiers is called HOLMES WARM MIST. It works great. About 40-50 dollars.
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